It looks like most posts are a couple of years old. I would be fine with donating some if there is an active forum, but I don’t want to pay money if the forum has gone quiet. I am brand new to Cushing’s and I’d love to discuss it if possible. So if people are out there, let me know…
Hey there – the forum is very lightly active – my personal belief is that Facebook all but eradicates the need or desire for a monitored forum. Posts have dropped off to the point that it is difficult for us to keep track of the odd post until it’s been in queue for a week, two weeks, or longer. We are phasing this portion of the website out to concentrate on adding more educational content and leaving the interactions to Facebook!
But, if you’d like to connect directly, please feel free to e-mail me at [email protected]!
Do you have a Facebook group or can you recommend one? A lot of health support groups I’ve tried are very toxic. Need help…
Hi, unfortunately we wouldn’t recommend any Facebook groups. Doesn’t mean there aren’t good ones, but as far as we’ve seen, the moderation in the groups does not prevent patients from diagnosing each other, disparaging doctors and treatments based on their individual opinions, and other types of negative communication. There’s good stuff in between, and patients who try earnestly to help others…but like you said, ultimately a lot of it comes off as toxic. We considered a Facebook page but decided against it because the same problem would exist – no time to moderate properly. I’m not sure what the solution to that is because social support remains an extremely important element to a patient’s journey and the ability to talk with other patients within minutes of searching is usually way too sweet to pass up. Sorry!
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